Rebuilding lives after stroke

What we think about:

Carers

What we think

What we think about: Carers 2

There has been progress in establishing policies to support carers over the last few years. For example, new laws3 and strategies4 across the UK have placed duties on local authorities to support carers. But it is clear that more needs to be done to recognise and support carers. Carer’s assessments, offered by local councils in England, Wales and Scotland and Health and Social Care Trusts in Northern Ireland, look at how caring affects carers’ lives. This includes physical, mental and emotional needs as well as the level of care that carers are able and willing to provide. However, in a recent survey, only 65% of carers had received an assessment and many said it was simply a “tick-box exercise” without leading to real support.5

When carers are not supported, they may be unable to take time to look after themselves, which can affect their own health and wellbeing. Carers are more than twice as likely to fall ill as someone who is not in a caring role, due to the pressures their caring role brings.6 Carers need to take breaks from caring to do things for themselves. Regular breaks allow carers to relax, take time for hobbies, spend time with family and friends and go to see their GP if needed. Carers often report that not getting good quality, affordable and reliable care prevents them from being able to take breaks.7

Carers of stroke survivors have told us they felt abandoned by the healthcare system after leaving hospital, as

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Stroke is the leading cause of disability in the UK, with four out of ten stroke survivors leaving hospital needing help with day-to-day activities.1 Research has shown that carers, rather than personal social services, provide the majority of care and support for stroke survivors.2 It is vital that all carers involved in decision making receive a carer’s assessment and that commissioning bodies provide appropriate services to properly address all of their needs.

What we think about: Carers 3

they were left to care for their loved one alone.8 Official guidance says that the impact of the stroke on the person’s carer must be considered so that appropriate support can be identified.9 But as the effects of a stroke can vary greatly and because stroke strikes without warning, there is often no time to prepare for taking on a caring role.

Carers told us that getting the right information about stroke, its risk factors and effects, as well as the support available for carers, is vital for them be confident in their sudden caring role. They also said there needs to be more emotional support for carers to adjust to their new role.10 Carers are also likely to suffer from anxiety and depression, many feel

frustrated at their situation and guilty for finding it hard to cope or wanting time for themselves. Carers also often report they become isolated and lonely.11 Carers need peer support opportunities to talk to others in similar positions, safely share their frustrations and learn from others’ experiences.

Carers are often the person who knows a stroke survivor and their condition best, so they should be involved in decisions about care. However too often this is not the case.12 This is particularly important for decisions around discharge from hospital, to ensure carers are comfortable to take over the caring role from hospital staff.

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Why do we want to see?

What we think about: Carers 4

• all carers being offered a carer’s assessment, as well as CCGs, local authorities, trusts and health boards commissioning services to address identified needs

• all carers being given the support to take regular breaks and maintain their wellbeing

• all carers being given access to reliable information and advice to understand stroke and their caring role

• all carers being given access to emotional support if they need it to adjust to their caring role, and peer support to reduce the impact of loneliness and social isolation.and particularly for those with communication difficulties.

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We want to see a better funded social care system that is able to properly support those with social care needs and the carers who support them. This includes:

What are we doing?

What we think about: Carers 5

Influencing policy

• We will continue to work within the Care and Support Alliance in Britain, calling on the Government to create a properly funded care system that can reduce the burden on carers.

• We will support commissioning bodies to put in place the recommendations for supporting carers laid out in the national plan for stroke in England and The Carers Scotland Act.

• We will continue to work within the Coalition of Carers in Northern Ireland to address issues affecting carers.

• We will continue to work with the Regional Partnership Boards in Wales and support their work to implement the Social Services (Wales) Act 2014 and identify and resolve carers unmet needs.

Providing information and support

• We will continue providing information and support about how to request a carer’s assessment through our services and national helpline.

• We will continue providing Life After Stroke Grants for carer respite breaks.

• We will continue providing support for carers through our National Helpline, My Stroke Guide, Stroke Recovery Service and our education programme, Caring and You. Caring and You helps carers to:

- understand what a stroke is and how to reduce the likelihood of a second stroke - understand and manage the unseen effects of a stroke - understand the importance of looking after themselves.

Policy to be reviewed June 2019

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References

What we think about: Carers 6

1. Royal College of Physicians Sentinel Stroke National Audit Programme (SSNAP). National clinical audit annual results portfolio March 2015-April 2016. Available: http://bit.ly/1M5R3Op

2. Patel A, Berdunov V, King D, Quayyum Z, Wittenberg R, Knapp M (2017). Current, future and avoidable costs of stroke in the UK. Executive summary Part 2: Societal cost of stroke in the next 20 years and potential returns from increased spending on research. London: Stroke Association. Available: https://www.stroke.org.uk/sites/default/files/costs_of_stroke_in_the_uk_report_-executive_summary_part_2.pdf

3. Welsh Government Social Services and Wellbeing (Wales) Act 2014 Available: http://gov.wales/docs/dhss/publications/160127socialservicesacten.pdf Last Accessed 22nd January 2018

4. Carers Strategy: Second National Action Plan 2014-2016 Available: https://www.gov.uk/government/uploads/sys-tem/uploads/attachment_data/file/368478/Carers_Strategy_-_Second_National_Action_Plan_2014_-_2016.pdf Last accessed 22nd January 2018

5. Carers UK State of Caring 2017 Available: https://www.carersuk.org/for-professionals/policy/policy-library/state-of-caring-report-2017 Last Accessed 22nd January 2018

6. Carers UK State of Caring 2017 Available: https://www.carersuk.org/for-professionals/policy/policy-library/state-of-caring-report-2017 Last Accessed 22nd January 2018

7. Carers UK State of Caring 2017 Available: https://www.carersuk.org/for-professionals/policy/policy-library/state-of-caring-report-2017 Last Accessed 22nd January 2018

8. Stroke Association Survey (2017)9. NICE Guidance Stroke Rehabilitation in Adults Available https://www.nice.org.uk/guidance/cg162/chapter/1-Recom-

mendations Last Accessed 22nd January 2018 10. Stroke Association Survey (2017)11. Stroke Association (2013) Feeling Overwhelmed p.17 Available: https://www.stroke.org.uk/get-involved/campaign-

ing/past-campaigns Last Accessed 16 April12. Stroke Association (2013) Feeling Overwhelmed Available: https://www.stroke.org.uk/get-involved/campaigning/

past-campaigns Last Accessed 16 April

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© Stroke Association 2019Stroke Association is a Company Limited by Guarantee, registered in England and Wales (No 61274). Registered office: Stroke Association House, 240 City Road, London EC1V 2PR. Registered as a Charity in England and Wales (No 211015) and in Scotland (SC037789). Also registered in Northern Ireland (XT33805) Isle of Man (No 945) and Jersey (NPO 369).

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When stroke strikes, part of your brain shuts down. And so does a part of you. Life changes instantly and recovery is tough. But the brain can adapt. Our specialist support, research and campaigning are only possible with the courage and determination of the stroke community. With more donations and support from you, we can rebuild even more lives.

Donate or find out more at stroke.org.uk

Contact usWe’re here for you. Contact us for expert information and support by phone, email and online.Stroke Helpline: 0303 3033 100From a textphone: 18001 0303 3033 100Email: helpline@stroke.org.ukWebsite: stroke.org.uk

Rebuilding lives after stroke